Who We Are

RAAP At A Glance

The Rare Access Action Project (RAAP) began in 2017 as an ad hoc coalition advocating for solutions to rare disease patient access in health care. Our organization has evolved and is now a registered 501 c4 non-profit that is engaged in ongoing initiatives on both the Federal and State levels.

Consisting of patient advocates, emerging life science companies, and other rare disease stakeholders, RAAP, is committed to exploring policy solutions to address structural issues in access and coverage. RAAP will engage with research, public education, issue advocacy, and lobbying activities to shine a light on the challenges facing rare disease patients while offering innovative solutions to reduce or eliminate barriers to rare therapies.
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Leadership Team

RAAP is led by Michael Eging. For 25 years, Mike has worked as a life sciences professional in Global, State and Federal Government Affairs, Advocacy, Communications and Market Access. With 12 years of advocating on behalf of rare disease issues, Mike is a passionate advocate for solutions that make a difference in the lives of patients without a voice.